Parents plan campus for autistic adults

ORLEANS — There was a time when Lauren and Bob Jones felt they were losing their son, and themselves, to autism.

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By K.C. MYERS

capecodtimes.com

By K.C. MYERS

Posted Oct. 2, 2012 at 2:00 AM

By K.C. MYERS

Posted Oct. 2, 2012 at 2:00 AM

First Fundraiser

WHAT: A fundraiser for Cape Cod Village Inc. (with trivia contest, silent auction, appetizers and a chance to meet local politicians, business leaders and parents who are the grass-roots organizers...

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First Fundraiser

WHAT: A fundraiser for Cape Cod Village Inc. (with trivia contest, silent auction, appetizers and a chance to meet local politicians, business leaders and parents who are the grass-roots organizers for young adult children with autism)

WHERE: Sea View Restaurant, Dennisport

WHEN: 6 p.m. Nov. 2

TICKETS: $50 in advance, $55 at the door

INFORMATION: www.cape

codvillage.org

» Social News

ORLEANS — There was a time when Lauren and Bob Jones felt they were losing their son, and themselves, to autism.

A lot has changed for the East Orleans family. Their son Alexander, now 24 and living in a group home, thrives on social interaction, and his parents are determined that he get it, even after they are gone.

So the couple, therapists and longtime owners of Orleans Psychotherapy Associates, are starting a campus-style residential community for adults with autism.

They envision the so-called Cape Cod Village near a town center, within walking distance to shops and restaurants. The village would house 16 adults in four homes and be surrounded by a commons.

The Joneses and a group of other parents with autistic children or young adults have formed a board of directors. They have planned a first fundraiser for Nov. 2 and hope to soon purchase about 4 acres for their campus.

Working with the Housing Assistance Corp. and other agencies, they predict the Cape Cod Village Inc. will be completed by 2014 or 2015, said Bob Jones, who stepped down last year after serving on the Orleans and Nauset Regional school committees for 17 years.

Right now there are lots of group homes and places for people like Alexander, who needs 24-hour care. But they are not for adults with autism specifically, Lauren Jones said.

Yet there is a "tsunami" of people who have been diagnosed with autism in the last decade.

"From my research on the state Department of Elementary and Secondary Education website, 282 kids with a diagnosis of autism are now in the Cape and Islands schools," Bob Jones said.

These children will be graduating from the system within 12 years, he said. Particularly for those with more severe forms, they'll need a community, he said.

"We want a place for our son from now until he's a senior citizen," Bob Jones added.

The couple found out their son was autistic when he was 3. At the time, in 1988, such a diagnosis was rare, about one in 10,000, he said.

By 2008, one in 88 people was diagnosed with some form of the disorder, which can range from mild disabilities to severe and can include mental retardation.

Today, one in 54 boys is diagnosed with autism, according to the U.S. Centers for Disease Control. And that costs the United States $90 billion annually, according to the Autism Society of America.

The statistics don't come close to explaining the personal struggle it poses for families.

Aside from being nonverbal, Alexander couldn't walk on sand or grass when he was young. If the wind blew he would scream, his father said.

As he got older, it became almost impossible to take him anywhere.

"Transitions were extremely difficult," Lauren Jones said.

"He would flop on the ground, kick and bite," Bob Jones said.

The couple, who have two older children and a full-time therapy practice, became completely overwhelmed.

"We were prisoners of autism," Lauren Jones said.

When Alexander was 11, "We made the excruciatingly difficult decision to sent him to a residential school," Bob Jones said. "The intensity of the services he needed, we couldn't provide."

They sent him to the Boston Higashi School in Randolph.

"Within one year, his behavior was 90 percent better," Bob Jones said. "He was social, he lost most of his aggressive behavior. They took a kid who couldn't walk more than a quarter-mile and had him jogging 1.4 miles a day."

At the age of 22 — the age at which the state no longer pays for education for the disabled — Alexander moved to a group home in Marstons Mills.

"It's a nice house, in a nice neighborhood, but we feel it's isolated him," his mother said.

The Joneses are modeling the Cape Cod Village on Sweetwater Spectrum, a residential community about to open in Sonoma, Calif., that was founded by parents of another student at the Boston Higashi School.